Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  10-18-2008

Topic:  Open Forum

Host: Mike Goynes


BEGIN CHAT

terryW: Hello,
MikeG: morning Terry
terryW: How are you
MikeG: not too bad - better than some mornings
terryW: I just had someone show up for the sig others chat
terryW: they thought it was this week
MikeG: my balance is getting worse.
terryW: I hear that Mike
terryW: Balance
terryW: mine is terrible
terryW: I need counter weights on me
terryW: when I bend over for anything
UTE: Morning Terry & Mike...my old computer hasn't been able to get in for quite a while...kept dropping off in the past
MikeG: yep - it's getting harder for me to walk - even with a cane
terryW: Hi UTE
terryW: I hope you have no problems today
terryW: Hi MUrf
murf: morning
MikeG: UTE - I had a problem with Java this morning... had too many virtual machines running...... had to close all IEs and start from scratch - it worked fine after that.
terryW: Mike I went though a real weak spell for the past couple months and this month I seem to have goten more strength back
terryW: strange
UTE: I'm copmputer iliterate whats a virtual machine?
terryW: Great UTE
MikeG: this new chat app doesn't drop you anymore. We had some problems with the old one.
terryW: My avatar is to big I am gonn get rid of it
MikeG: too big?
terryW: it was taking up to musch screen space
terryW: much
MikeG: looks the same as the rest to me...
terryW: just seemed too bold
MikeG: UTE - it's what Jave uses to run the chat a-pp.
terryW: Winter is gonna be coming soon and I am trying to get the property all in order before the weather change, firewood, Garden pruned back
terryW: I have found some hired help finally
MikeG: you got too much to do there Terry!
MikeG: good!
terryW: yep the animals are a lot of work
UTE: Mike, can I ask how old you are, I'm 62 and even with a walker I'm having more trouble getting around
MikeG: I'm 60
terryW: Today I get my flu shot
MikeG: I think it's got a lot to do with what CAG repeat count you have. I've got a 47.
MikeG: yeah, I've got to get one too - soon!
terryW: Murf how are things going?
MikeG: I think he's getting coffee or eating breakfast... :)
terryW: I am having to go into the hospital on Nov 5th to do an in-house sleep study to try to find out why I am having problems with my BiPap
terryW: overnight study
MikeG: UTE - do you know what your CAG repeat count is?
terryW: Hi ron
MikeG: morning Ron
Ron: Hi guys. How are you all doing?
terryW: doing ok
MikeG: not too bad today.
UTE: Terry, I hear ya when it comes to getting ready for winter...I don't think I'll be able to get to the bus for work in the snow this year... so checking into disabled bus.,..not sure aboout number of CAGS.... I gave up on a oxygen concentrator
terryW: hi Gary
MikeG: morning Gary
Gary_KC: Good morning. This is Gary joined from KC.
MikeG: how are you today Gary?
Ron: Hi Gary.
terryW: Hello Stan, welcome
MikeG: morning Stan
Stan: Morning
terryW: Stan are you new to chat?
Gary_KC: MikeG: I am fine thank you. It is a nice sunny day.
Ron: Hi Stan.
Stan: No. I had to get a new ID due to the changes on the Chat
MikeG: I heard you couldn't make the conference next month - sorry.
Ron: It is 49 degrees here in south east Penna.
terryW: oh ok
MikeG: nice - we're in the 70s here in FL
terryW: well welcome back thenstan
Stan: Thanks
UTE: Stan, I grew up at Cambridge Junction on Washington Lake from 1946 thru the 60's and went to Stout JH in Dearborn
Ron: Terry--where did you finally find some hired help at the ranch?
Stan: I grew up in Detroit, went to Cass Tech. Retired now and living in Albion
UTE: I think Albion is just a few miles from where M50 and US 12 are?
Stan: About 20 miles west
terryW: Ron, the kid across the street is going to help with the firewood, and another lady I know is gonna help with the gardeing part
MikeG: I got Dr Chang to commit to talk about his J9 compound on Wednesday, 19Nov. Should be VERY interesting... some really great news will be announced...
Ron: Thank God you finally go some help.
terryW: Mike, you got the inside scoop that it is GRET new?
terryW: GREAT?
MikeG: YEP!
terryW: fingers not working right this morning
terryW: That is great
Ron: Murf--have you been feeling any better?
MikeG: I think J9 will be our next big hope. I know some believe that deutasteride is helping them but I wonder why we haven't heard anything about the trial yet...
MikeG: we'll learn something about it at th conference - I'm sure
MikeG: morning TJ!
terryW: Murf has been doing a lot of work for the KDA with his company setting up booths and giving out Info on KD to raise funds
MikeG: how you doing?
TRAILBLAZER: Good morning all
terryW: thanks murf
terryW: Hi TJ
Ron: Mike--since getting off the deutasteride I have felt alot weaker.
TRAILBLAZER: Can't complain - right now I have acute Bronchitis and acute sinnunitis
murf: Talking to Floyd in Mexico and he's big time to KDA
MikeG: yes he has. And some good work with Carla who is setting up a KDA bike ride for us.
murf: donating
TRAILBLAZER: Hi Terry
Ron: Hi TJ--glad to see you made the chat.
TRAILBLAZER: Hi Ron - yeah I just got home from running errands
MikeG: Ron - I know I've heard that from several people.
terryW: I have been trying to update the KDA shopping Page but withthe ecomomy some of the companies have gone out of business so I had to remove them and I am having to add new ones.
murf: Ron no
terryW: Please remind people to shop on the KDA shopping page for the holidays
Ron: Sorry to hear that.
MikeG: I hope Amazon NEVER goes out of business! I do all my on-line shopping there with the KDA link
terryW: I will be mailing out a memo to remind everyone once I get all the stores loaded up
terryW: Amazon I think is in no trouble
MikeG: I hope not - it's killing eBay!
terryW: Amazon is a drop shipper that uses million of sub companies
MikeG: everyone on eBay is gouging people with shipping charges!
terryW: i bet
terryW: Ebay has raised their fees and peaple are goughing other on shipping charges
MikeG: YEP!
terryW: People
Ron: Terry--is the BD meeting back to 12:oo?
terryW: Ebay is not the same as it was years ago
MikeG: no 1pm
terryW: no ron
MikeG: didn't you get the message yesterday
Ron: Thanks.
terryW: Ron I sent the Pifeon to your place I guess he did not make it
terryW: Pigeon
terryW: LOL
Ron: LOL
TRAILBLAZER: How many people are signed up for the conference?
MikeG: I think it's almost 40 now TJ
TRAILBLAZER: Thanks
terryW: Mike & TJ look like twins
TRAILBLAZER: How many were in Vegas last year
Ron: TJ How come you are not going to the conference?
UTE: Trailblazer, what part of the country are you in?
TRAILBLAZER: We are, Terry!
TRAILBLAZER: Right ouside of Houston
TRAILBLAZER: Well I tell you Ron I simply don't have the energy!
terryW: We drove past El Paso a couple of weeks ago, that is where cars go to die
terryW: So may wrecking yards, Unbelievable
Ron: Sorry to hear that TJ.
murf: This may be my last conference too
terryW: TJ, I meant your Avatar is the same as Mikes
Ron: Murf--you will be there if at all possible. I know you.
TRAILBLAZER: I know Terry!
murf: I'll be there this yr
terryW: Travel is hard on all of us, I wish I had a teleporter
TRAILBLAZER: Yeah Murray won't miss until he goes into that big skybox
murf: next yr
Ron: Maybe next year we can have the conference in Texas.
terryW: next year what murf?
murf: I'm just so tied
MikeG: TJ, we'll miss you and your brother this year!
murf: tired
TRAILBLAZER: What brother
MikeG: wasn't that your brother that did the auction?
terryW: Ron you and your daughter will be at the conference this year, that should be nice
TRAILBLAZER: I thought he was going to be there again
MikeG: oh, is he signed up?
Ron: Yes Terry--I am lucky she is going with me.
TRAILBLAZER: Well he was on the schedule Terry sent out yesterday
terryW: I don't see ed on the registration
terryW: hmmmm
TRAILBLAZER: Weaser and Charley should be there from what she has told me.
terryW: or weaser & charley
TRAILBLAZER: He did not register last year either!
terryW: I hope they do soon
TRAILBLAZER: He paid but I think it was at the conference
MikeG: yes, we're counting on them.
TRAILBLAZER: Well Weaser told me they planned on it yesterday and they have a place right outside of Washington
MikeG: that's good - you should just bite the bullet and come too TJ!
MikeG: you can get a direct flight...
Ron: Did any of you guys have trouble getting a handi-capped room at BWI Marriot?
TRAILBLAZER: I'd have to fly and you know with the economy and all it's not too affordable
MikeG: Ron - you mean with a full handicapp shower?
murf: $218 return from Houston
terryW: that is a good price murf
MikeG: round trip Murf?
murf: yes
MikeG: that's great!
MikeG: do it TJ!!!
murf: continental
TRAILBLAZER: Yeah Weaser hit me up to fly up there and drive one of their cars back here for them
MikeG: we'd love to see you there!
Ron: No--Just a handi-capped height toilet and hand rails in the tub area.
MikeG: I didn't have a problem with that Ron... just couldn't get a roll-in shower.
MikeG: but the, I don't really need that anyway.
TRAILBLAZER: continental does fly there any more according to Weaser she said you book it through them but you'll fly Delta, that's what Charley had to do this week
TRAILBLAZER: does not
terryW: Bruce is trying to get into chat but can't for some reason
MikeG: tell him to try closing all his IE windows first.
TRAILBLAZER: Mike times are tough you know I'm on disability and that's not much
terryW: he did and tried 2 different browsers
murf: TRAILBLAZER continental IAH - BWI $218
MikeG: yep - I know TJ, got the same problem.
murf: non- stop
MikeG: can't beat that!
TRAILBLAZER: According to Weaser said yesterday Murf. I'm going on what she said.
terryW: DIsability is gonna go up by $60 mo.starting next year
murf: I just bought a ticket
MikeG: great!
TRAILBLAZER: That will get you a hotdog and coke
terryW: every little bit helps
MikeG: what % is that Terry?
murf: and there are more seats on the flight
TRAILBLAZER: Okay
terryW: not sure mike
MikeG: TRAILBLAZER - not at the stadium!!!
terryW: I just heard it on CNN
TRAILBLAZER: Yeah it does Terry
MikeG: how 'bout them RAYS!!!
terryW: go dodgers
terryW: NOT
terryW: :D
TRAILBLAZER: Yeah who can afford to go to a game at those prices
MikeG: they'll be playing the Phillies next!
Ron: Dodgers did just that. They WENT. LOL
terryW: Gary, so what have you been up to lately?
terryW: you also Stan
UTE: Does anyone use a light weight manual wheelchair for travel...the one my wife pushes me in is 13 years old and kills her back to lift it out of the car
terryW: I do UTE
terryW: I use both
Stan: Just getting things ready for winter now. Picking apples off my trees.
Gary_KC: I attend a local MDA support group and got Midicare part D infor.
terryW: depending on what I am going to be doing at the other end
murf: the airlines will accomodate you in a powerchair
terryW: Stan are you picking them?
murf: I've traveled with mine 4 times without incident
terryW: Gary what is Part D?
terryW: I have heard of Part B
MikeG: UTE - you should check with you local MDA office and see if you can get a newer one from the loan closet.
TRAILBLAZER: Part D is your drug plan
terryW: oh ok
Gary_KC: Terry: It is prescription drugs.
Stan: Yes with help from my wife, neighbor and nephew; and anyone else that wants apples. I still push the limit. I still climb ladders.
terryW: I am still under my wifes Insurance
UTE: Terry, is your manual chair light weight and what brand?
MikeG: me2
terryW: WOW stan, be careful
terryW: My chair is an invacare ultralight they call it, about 23 lbs
terryW: racing wheels
UTE: Stan, do you make cider with those apples?
terryW: removable wheels with the push of a button
terryW: makes it easier to load unload from a trunk of a car
Stan: No. We can the apples. Applesauce and pie filling.
terryW: my manual wheelchair is about 11 years old
terryW: still like new
MikeG: so at 23 lbs can you still lift it ok Terry?
Stan: I don't need a chair yet. I am using my cane more. Not looking forward to needing a chair unless it has a blown F.I. 350 to power it.
terryW: I take the Manual chair on trips where I know we will be renting a car that does not have the powerchair accesibility. My wife pushes me around in it
TRAILBLAZER: Gentlemen and I use the term loosley, no seriously I gotta run but all of you have a blessed day, week and month and well talk to you later. Murray I see you on Monday! Bye
terryW: ok, see ya TJ
MikeG: that's why I like my little power scooter - like a Go-go. It breaks down and no part weighs more than about 25 lbs.
Ron: TJ--are you realy going to RUN?
terryW: TJ ran
terryW: LOL
murf: CYA
MikeG: I hope he can make it to the conference - he needs to!
MikeG: we all need to!
terryW: Mike I can lift the parts of the chair seperatly if I take the wheels off and sit on the trunk bumper and then pull it up onto my lap and swing it into the trunk
terryW: that is the only way
MikeG: good plan
terryW: no way if I was standing
MikeG: you need to do what you CAN do
terryW: Have to find ingenious ways to do things with KD
MikeG: that's right - adjust!
terryW: Susanne usually does it if she is around
Ron: The more folks that attend the conference the more folks that are there to give and GET the boost we all need at one time or another.
MikeG: that's right Ron!
terryW: I have a light weight dolly I use for dog food & heavy bags of stuff I bring home from the store. I drag the bag off the back seat and it drops down onto the dolly
terryW: then I can pull the dolly carefully to wher I need it
Ron: I wonder what Bruce's problem is trying to get on the chat.
terryW: but pulling the dolly is getting hard
terryW: dog food weighs 34lbs
terryW: Salt roc for water softener 40lbs
terryW: those are the worst
Ron: I don't see how you do all that you do around the ranch.
terryW: I can hardly move them off the back seat
terryW: I use my Yamaha Rhino to pull theings around
terryW: its back tailgate is the same height as the 4runner door
terryW: so I just back up to the car and drag from one to the other
terryW: then drive it to where it ned to go and then drop it to the ground
terryW: Susanne has to lift it to fill the machines
MikeG: we've got a Yamaha Mule on the ranch in Texas... maybe you could come over and help us there sometime Terry. Sounds like you're experienced! :)
terryW: I am going to do it until I can no longer, it's either that or die of lack of self worth
MikeG: getting up on the John Deere or International tractors may be tough though.
terryW: yes Mike
terryW: the rhino has no dorrs and is at just the right height
terryW: doors
MikeG: I can't even get on the little Ford tractor...
terryW: I would die without it, it is my legs now
MikeG: but the Mule is great!
terryW: The Rhino Rules LOL
terryW: tastes great, less filling
Ron: Some of the things you guys talk about I only dream about doing. Climbing ladders, getting up on a big tractor. WOW!!
MikeG: :)
terryW: both are great
terryW: Ron I cannot climb up on a tractor
MikeG: me either
terryW: I have issues getting my leg over my sears riding mower center console
MikeG: I just watch my brother do it... :)
Stan: I understand what you guys mean. I either use my lawn tractor with the cart or my Kawasaki
terryW: whatever works for us
terryW: we have to keep pushing on
terryW: even when we think our strength is gonbe
terryW: gone
MikeG: that's right - you just have to realize you have limits... that change every month.
Ron: No matter how you adjust to daily challenges, be sure to thank your care givers, thoes who help you every day.
murf: got to go lie down, take care all
terryW: Some months you feel terrible and then it levels off and you feel a bit better
MikeG: right, Ron! what would we do without them?
MikeG: nothing!!!
terryW: strange disease
Ron: So long Murf.
Ron: Life is full of challenges.
terryW: Now if I could just get my dogs and horses to work for me
UTE: My wife and I went to the movie Lies? last nite and all the handicapped chair slot were occuppied... she had to lift my leg up one stair while I held on to the banister...getting out of the chair as the movie ended was the real challenge
terryW: I know that feeling UTE
MikeG: I'm sure it was UTE!
terryW: My horses do one thing around here and that is brush clear for fires
Ron: Glad you met the challenge UTE.
MikeG: I can barely get out of a chair without arm rests now.
terryW: they have eaten down the pature around the house to bare dirt
terryW: pasture
MikeG: that's good
Ron: Well guys-- I must go for now. Stay healthy till next we chat.
MikeG: you don't still have fires around you now do you Terry?
terryW: I have to sit when I take a leak because my balance when trying to stand is so bad
MikeG: cya in a bit Ron
Stan: Bye. Yake care.
terryW: anyone else sit
UTE: I far from met the challenge...all the weight lifting went to my wife and the uchers
MikeG: I doo too sometimes Terry.
MikeG: just need a handicapp toilet if it do.
terryW: trying to take photos without propping myself against something now is also tough
terryW: when I look thru the viewfinder I lose balance bad
MikeG: yep - me2
terryW: funny how that works
UTE: Terry, I agree that can be a good option... but then getting back up can be an even harder challenge
terryW: sit or stand is an option that you have to figure out at the stall based on handrails to pull yourself back up & such
MikeG: I went over to watch a shuttle launch and decided to take a video of it... I almost fell over but Paula caught me just in time.
terryW: I know that feeling Mike
terryW: I am gonna go for tody. talk with you all next time
MikeG: good thing we have observant caretakers,,,
MikeG: me2 too - take care evderyone - until next time.
Gary_KC: Bye, all. Talk to yours the next time.
UTE: Glad to have gotten thru today...my computer is about 10 years old...and everytime Mozilla updates it gets harder to get on...so long